Kyle (and all)-

I totaly agree with the assement about cp...kids..money...and research my
point is  that dosen't meen we don;t need to make people awear about these
issues just the same--in fact awearness becomes even more important because
of the problems we are facing--the whole issue was virturaly ignored 10 years
ago now it is starting to gain some momentum but more needs to be done.  Not
just to do research but we need to make people awear of the problem .  It is
an issue that I try to bring attention too whenever I can...to make people
relize that CP dosen't disappear when you turn 13 and that the issues faced
by parents and kids with CP are very diffrent than those faced by older teens
and adults with CP.  Not to offend any of the parents and/or kids on the list
of course you issues are important, but as adults with CP many more new
issues arrize wich are more disabeling in my mind than the childhood ones--at
least the ones I faced in school--in some cases.  I am much less abel to do
things physically now than I was when I was a child and I am only 20. I have
also had tremedus problems starting in highschool with excessive fatigue and
lack of stamina and also arthritic pain.

Parents, don't get me wrong I am not complaining I am just trying to improve
my coping ability as many of us are.  There are some "experts" on childhood
CP but ask some of them about aging and you get blank stairs most of the
time...there are a few who are knolegable but they are alot fewer and alot
farther between then when you are looking for a pediatric CP expert.  This is
something that is very frustriting...going to doctors and having all these
complaints and geting either blank staris back or a responce like "it's all
in your mind" or "I don't know" or "I can't tell you".  This is one of the
things that makes aging with CP all the more difficult to cope with at least
for me.  And to think that there are more than 500,000 people with CP a good
portion of who are over 20 and this is what we get when we go to the doctor.
I meen statisticly lets see UCPA estimates that 1 to 3 in every 1000 births
will have CP.  If you use 18 years as a marker for adult hood a very large
number of those 500,000 people with CP are adults...I would go so far as to
say that adults with CP outnumebr Kids with CP...but then the adults are
compleetly ignored for the most part medicaly speeking because they don;t
have "kid appeal"...it is just amazing to me.

I was always told that CP dose not change over time...well that is true
physiologly the lesions in the brain don't change...but in acualiy it is in
my case very false (as I have said many times befor over the last 6 years on
this list) because the symptoms of CP have worssened and secondary
disabilities have developed and so you have to redevlop coping
mechinisms--which is very very difficult when new aging symptoms keep poping
up at an ealier age then in the abel boddied.

There has been a balfcon pump thred in the past few days wich I find
extreemly intresting even though I do not have spastic CP...one person finds
it to work well for her and another finds altrenitive methods to be better
for controlling her spasticity.  When answering questions I tend to be warry
of the pump as well as both of the "B" durgs (balfcon and botox) because they
have a lot of side efects and in some cases very bad side effects like
excessive drowsieness but I understand on the other hand that for the right
person these durgs work very well.  My feeling is that you should first try
other methods and then try these drugs and last resort surgery--if there is
no other way and all elce has been tried-- but everyone is diffrent.  All in
all the point is the same...the goal is to cope with the symptoms of CP and
of CP and aging and rether that is through traditional, non-traditional, or a
combination of the two (like I use) it dosen;t matter.  It's what works for
you.  I think the combination of both western medicine and alternitive
therpies is the key to managing and and coping with the CP aging process.  At
the same time doctors and other health professionals as well as the public
need to be made aware of the fact that CP dosen't go away just becasue you
grow up and that there are some very diffrent and hard issues facing adults
with cp when compared to kids with CP or normal adults.  The point must be
stated again and again kids with CP become ADULTS with CP.  Awearness is the
key!

Talk about long winded...can you tell this is a BIG issue with me.

Yours,
Anee
Webmaster, CPIC
http://www.geocities.com/aneecp/CPIC.html

In a message dated 10/29/1999 2:52:59 PM Central Daylight Time,
[log in to unmask] writes:

<< Well, Anee, welcome to the "real world".  I think we've all said the same
 thing--especially those of us (me, Bobby, Ken, et. al.) who already are
 older and are experiencing the accelerated aging effects.  Boils down to
 this--the baby boom generation of CPers is the first to live "normal"
 lifespans (in technologically advanced nations, of course).  The research
 $$$
 have traditionally gone to the kids because it made the most sense--nobody
 lived long enough to worry about "mature" adults.  Besides, seeing some
 doe-eyed youngster's face on a billboard is going to tug at your
 heartstrings a lot more than looking at my grizzled mug.

 -Kyle >>